At PKIDs, we help families affected by infectious diseases, and we work to educate ourselves and others about these diseases. Our goal is to prevent infections.

In 2015, we’re turning the spotlight on meningitis, or more accurately, meningococcal disease.

Meningitis is scary—and confusing. For instance, if I say that I have meningitis, it sounds like I’m saying I’m infected with a germ called meningitis. But, there is no germ called “meningitis.”

Adding to the confusion is the fact that we tend to use that term loosely for what should be called “meningococcal disease.”

Meningococcal disease causes meningitis, and it may also cause blood poisoning (septicemia).

WHAT IS MENINGITIS?

Our brains and spinal cords are protected by three layers of tissues, one on top of the other, along with a thin river of fluid that runs between the middle and bottom layers. That river, the cerebrospinal fluid, helps the tissues cushion the brain and spinal cord. It also brings in food and takes out trash from the brain.

These tissues that protect our brains and spinal cords are called membranes, or meninges. The whole setup reminds me of a hand in a baseball glove; the hand and wrist are the brain and spinal cord, and the layers of the glove are the meninges.

When I say that I have meningitis, I’m saying my meninges, those tissues layered over my brain and spinal cord, are swollen or inflamed.

This swelling usually causes symptoms that are typical and a tip-off that a person is suffering from meningitis. Those symptoms include fever, a stiff neck, and a severe headache.

There are other symptoms that may be happening, but those three are the most common.

When certain bacteria, such as Neisseria meningitidis, cause meningitis, it’s called bacterial meningitis.

The bacteria can get into the bloodstream, cross the blood-brain barrier, and cause meningitis, as described above. They get into the river, the cerebrospinal fluid, and multiply like crazy, spitting out poison. The tissues react to the poison by becoming swollen and inflamed. If it gets bad enough, the swelling may cause seizures, or even brain damage.

WHAT IS BLOOD POISONING?

When bacteria such as Neisseria meningitidis get into the bloodstream, they can cause septicemia, or blood poisoning.

The poison released by the bacteria into the bloodstream makes the immune system wake up and start fighting. This war between the bacteria and the immune system can cause inflammation, or sepsis, which in turn can cause blood clots, and it may stop oxygen from getting to the organs. If this happens, the infected person may lose limbs, organs, and sometimes, his or her life. This can happen within hours of initial infection.

HOW TO PREVENT MENINGOCOCCAL DISEASE

The bacteria that cause meningitis, and possibly septicemia, can spread in many ways, including through a kiss or a cough, a sneeze or a sip on a shared straw.

To avoid infection, we do the same things we do when we’re trying to avoid influenza.

Wash our hands.

Keep our hands off of our nose, mouth, and eyes.

Don’t share items like food, forks, lipstick—anything that can transfer germs from another person’s mouth to our own.

Get immunized. There are several germs that cause meningococcal disease, and luckily, there are several vaccines to protect us. Ask your provider which vaccines are appropriate for your age and immunization history.

Keep our immune system strong by doing all those things we hear about: exercise, eat healthy, and get plenty of sleep.

Be responsible and cover our coughs and sneezes. We don’t want to spread infections that we may have.

There are certain groups that are at greater risk of becoming infected with meningococcal disease: those living in close quarters with large groups of people, such as youth campers, dorm residents, or military barrack inhabitants; individuals whose immune systems are compromised; travelers to regions where meningococcal disease is common; or people exposed to others who are currently infected and infectious.

The harm that can come from this infection is so great, it’s simply not worth the risk. We all need to get ourselves and our loved ones in to see our provider for vaccination against this truly horrible disease.

My whole life is on the Outlook calendar. Birthdays, meetings, to-do lists, reminders—when anything pops up, it goes on the calendar. Doesn’t matter if it’s four days or four years from now, it gets noted.

In a few months, my younger daughter will be 16. If you sat at my computer and clicked to that day, you’d find two things: 1) Bug’s birthday and, 2) Call to get mening booster for Bug. (Don’t tell her I called her Bug in this blog, but that is what you’d read in my calendar. It stands for Love Bug.)

Meningitis, or more accurately, meningococcal disease, is the real version of the monster under the bed. That’s how scared I am of this disease.

Love Bug – the early years.

It’s not as common as flu, but when it strikes, it can kill or do horrendous damage to the body within hours of the first symptom appearing.

In the US, we have vaccines we use against several strains of the disease.

In the fall of 2014, the FDA approved a vaccine against serogroup B, a strain not found in our current vaccines. There’s at least one other vaccine against serogroup B that’s waiting for approval from the FDA, and I’m guessing that approval won’t be long in coming.

Because we haven’t had a vaccine against serogroup B, we’ve left our at-risk populations defenseless. When Princeton and Santa Barbara had their meningitis outbreaks in 2013, the culprit was serogroup B.

But, the good news is that the ACIP (Advisory Committee on Immunization Practices) will now take a look at the vaccine that protects against meningitis serogroup B and decide what recommendations it will make. The ACIP exists to make “recommendations on how to use vaccines to control diseases in the United States.”

It could be that the ACIP will decide to recommend that all young people ages 10 to 25 should be vaccinated. Or, they may recommend that the vaccine only be given in the event of an outbreak.

The CDC has a specific definition of outbreak when it comes to meningitis, and that is: An outbreak occurs when there are multiple cases in a community or institution over a short period of time. Specifically, an outbreak is defined as three or more cases of the same serogroup (“strain”) occurring within three months. Sometimes having just two cases in a school or college can meet the outbreak definition.

My personal feeling is that we’re a country that can afford to protect ourselves against vaccine-preventable diseases and we should take advantage of that fact. Why wait until an outbreak to start vaccinating? Let’s get the at-risk populations vaccinated and not worry about an outbreak.

I suspect that as discussions ensue, the cost of vaccinating pre-outbreak will be a major factor in determining what the official recommendations will be. After all, the federal government does have a budget. Maybe a few more zeroes in their budget compared to yours or mine, but still.

I know that other interests are clamoring for their share of the pot. Alzheimer’s research, foodborne illness, alcohol poisoning—everyone deserves some of the health and medical dollars available. As do those with other interests, such as agriculture, space exploration, or marine biology.

But still.

Preventing meningococcal disease has always made more sense to me than hoping treatment works and burying those for whom it does not.

I’d like to hear your thoughts on this. We will share them with ACIP members as they meet to discuss what recommendations to make for the new vaccines.

Today is World Meningitis Day, and the start of World Immunization Week. Are you young and healthy? Stay that way! It’s Your Choice, so choose to get immunized and get on with what life has in store for you.

Abby Blanco-Wold was a young woman on her way to the Army when she was attacked by meningitis. This is Abby’s story, as written by her.

TWO DAYS TO GO

Two days to go, and I would have been gone, off to the ARMY . . . Tuesday at dawn.

Out to the gun range my dad and I went, I did really well, to our amazement!

I wanted to shoot a gun once before basic training, the old men that were there found it quite entertaining.

I had this slight headache throughout the day—didn’t recognize the faint scent of death’s bouquet.

Later that night, out with friends one last time, I threw up by a building, but then I felt fine.

We went home anyway, but stopped for a treat. I didn’t even feel bad enough not to eat.

I awoke in the night, throwing up once again . . . except this time throwing up took forever to end.

So I went back to sleep, but when I arose, intense pain was all over, from my head to my toes.

We need to go now, something’s not right. Upon changing my shirt, came the real fright.

Both universities are experiencing an outbreak of meningitis—specifically, serogroup B (that’s the genetic fingerprint of the particular strain of meningitis).

In the US, we don’t have an approved vaccine against this serogroup or strain, but we do have vaccines that fight other strains of meningitis, such as C and Y. Those vaccines are working great!

We’re seeing more serogroup B infection right now because there’s no vaccine available in the US to control transmission. And, we’re seeing an outbreak because that just happens sometimes, particularly when there’s no vaccine to prevent it.

As of 25 November, there have been seven cases identified at Princeton, with a probable eighth case not yet formally identified. Three cases have been identified so far at UC Santa Barbara.

Some of the cases have been serious, but to date there are no deaths. Dr. Amanda Cohn, a pediatrician and expert in meningitis with the CDC, talked about these outbreaks today in a teleconference.

She said that while health departments and healthcare providers should be aware of symptoms and think about meningitis should they see indications, it is safe for the college kids to come home for the holidays.

CDC is not expecting transmission in the home. It tends to occur with very close contact (“french” kissing, sharing a room and coughing all over a roommate). Generally, you might get either meningococcal meningitis or meningococcal septicemia from a meningococcal infection.

Symptoms of meningococcal meningitis as noted by CDC include:

Sudden onset of fever

Headache (severe)

Stiff neck (hurts to move it)

Other symptoms might include:

Nausea

Vomiting

Photophobia (increased sensitivity to light)

Altered mental status (confusion)

The symptoms of meningococcal meningitis can appear quickly or over several days. Typically they develop within 3-7 days after exposure. This infection can be serious with long-term consequences such as hearing loss or brain damage, and it is at times fatal.

Symptoms of meningococcal septicemia may include:

Fatigue

Vomiting

Cold hands and feet

Cold chills

Severe aches or pain in the muscles, joints, chest or abdomen (belly)

Rapid breathing

Diarrhea

In the later stages, a dark purple rash

These symptoms can come on in a matter of hours and the infection is very dangerous.

Prevention means washing your hands and covering your coughs and sneezes. Get up-to-date on your immunizations (no matter your age) and know that, if a healthcare provider suspects someone in the home may have an infection, those in close contact will receive antibiotics to prevent the spread of the disease. There are some manufacturers working on vaccines that include serogroup B for approval in the US, but they are not yet at the final stages of development on those vaccines.

The National Association of School Nurses (NASN) has a message for parents: when it comes to vaccinating preteens and teens against meningococcal meningitis, immunization rates don’t measure up.

Vaccination is the most effective way to help protect against meningococcal meningitis, but many parents may be unaware of the importance of vaccination or that their teens may need a second dose to help keep them protected during the years when they are at greatest risk of infection.

The result? Nearly 40 percent of U.S. teens have not been vaccinated and remain vulnerable to this potentially devastating disease.

The NASN’s Voices of Meningitis campaign is calling on communities across the country to “boost” their vaccination rates by letting parents know that health officials recommend vaccination for preteens and teens beginning at 11 or 12 years of age with a booster dose by 18 years of age.

Meningococcal meningitis may be rare, but it is a serious bacterial infection that can kill an otherwise healthy child in just a single day. If you have preteen or teen children, contact their school nurse or health care provider today to discuss vaccination; even if your child was previously vaccinated, a second dose may now be needed for the best protection against meningococcal meningitis.

(Years ago, we at PKIDs had a lengthy argument/discussion with a few public health officials about the need to recommend that young kids be vaccinated against meningitis. We didn’t win. This post, reprinted from Parents Who Protect, illustrates why it’s important that someday, all young children be protected.)

It has taken me several weeks to pull myself together, to sit down and take a breath. I don’t imagine this will ever get easier or hurt any less. But I have to tell this story and hope that because of it, one less child will die from meningitis, meningococcemia, or any meningococcal disease.

I have always thought this saying to be true, “An ounce of prevention is worth a pound of cure.” Therefore, on the one-month anniversary of Phoenix’s death, the time has come to tell his story.

Phoenix is my beautiful, intelligent and amazing son. I want every parent to know that he was a precious child who was loved, cherished and cared for by his parents and his twin brother. In just a few days, I went from being a happy mother of two playful little boys to a grief-stricken mother trying to find meaning in such a tragic death.

On the morning of February 9, 2012, Phoenix woke with a mild fever. He played with his brother, ate his breakfast, and then played some more. After eating lunch he laid down for his nap and around 2:00 p.m., woke up with vomiting and with diarrhea. Being the mother of twins, I am used to having both boys sick at the same time, so I thought it was a bit odd that Gryphon showed no signs of being sick at all. After getting Phoenix all cleaned up and settled down, I decided to check his temperature again. When I saw that it was now 104 degrees, I strapped him in the car and headed to the emergency room.

As we arrived at the ER, I noticed a small spot on his arm. I couldn’t linger on this thought because things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I couldn’t keep my eyes off of Phoenix. I started to realize he was now acting very strange; it was like he was hallucinating. He seemed at peace and started to sing to me.

Nobody, not even the doctor, recognized his symptoms. The hospital staff had decided to just keep an eye on him and monitor his temperature. Phoenix asked me to take him to the bathroom, and while he was sitting on the toilet, he kept losing his balance and falling off. Immediately I knew something was wrong, so I started screaming for help. Several nurses came into the room, and at this time, the doctor decided to do a spinal tap. Even though it is such a painful procedure, my precious Phoenix didn’t move at all.

The doctor and staff called for the helicopter to transport him to Oakland Children’s Hospital. In the meantime, the results came back positive for meningitis. When my husband came into the room, Phoenix’s face lit up and he asked his baba for milk and cookies. He appeared to be responsive and cheerful and started to sing E-I-E-I-O. The anesthesiologist suggested we put him under to help eliminate any pain that he may be feeling. That was the last time we heard his sweet voice.

When the helicopter arrived, I demanded to be transported with him. As we were walking out to get in, the hospital chaplain walked with me. We stopped to pray for a miracle. It was at that moment I knew my baby was dying.

After a 50 minute helicopter ride, we arrived at the hospital. While they were getting him out, I could see that his tiny body was covered in purple splotches called petechiae; his legs, his arms, and his torso. Phoenix was raced to the ICU. Coming into the room, I could see at least four doctors and ten nurses scrubbed in and ready to go. I was asked by the head nurse to stay in the waiting room and was told they would brief me on his condition.

Those were the longest two hours of my life. When she came back and told me Phoenix was the sickest boy in that hospital, I felt sick to my stomach. My husband had not yet made it to the hospital, so I stood there alone and in shock, trying to make sense of all that I was being told. As soon as my husband arrived with Phoenix’s twin brother, Gryphon, we were taken straight into the ER to make sure that Gryphon didn’t have the same thing as Phoenix. The decision was made to keep Gryphon under observation for the night until we could get a better grasp on what was happening with our baby son. The nurses came in periodically and updated us on Phoenix’s condition. I couldn’t bear being separated from either one of my boys.

I was so worn down that I couldn’t possibly process all the information that was being given to me. At times, I didn’t understand it, or maybe I simply didn’t want to believe it. I cuddled up to Gryphon and tried to fall asleep with him. Around 2:00 a.m., Gryphon started laughing in his sleep, sat up, hugged the air, and said, “I love you.” Little did I know that, at around the same time, Phoenix’s heart had stopped for 15 minutes. I didn’t know it then, but I know now that Phoenix had come to say goodbye to Gryphon.

For the next three days, machines kept Phoenix’s little body alive. Then, we received the most devastating news we hoped never to hear: “Your son, at this moment, is the sickest boy in the whole world.” Phoenix was hooked up to countless IVs, lines, and machines, at least 15, going into his little body at one time. They also had him on an ECMO machine that was inserted into his arteries to help oxygenate the blood. He was so unstable to move that they could not do a CT scan on his brain because his heart had stopped, and his temperature had reached 106 degrees. They held off until Sunday evening to do the CT scans.

From Friday to Sunday evening, we heard from the doctors, “Your son possibly has severe brain damage due to his high fevers, he has pneumonia, looks like we will have to amputate some toes and fingers, looks like we will have to amputate all four limbs.” It was shocking and horrible; it was hell.

On Sunday evening, they were finally able to move him and did a CT scan. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. Throughout this extremely long weekend, the chaplain of the hospital stayed close with us. Sister Breanice was an absolute saint, and through her words and kindness helped Bart and I become at peace with where Phoenix was about to go. She was right there as we watched the surgeon take the ECMO out of his body, and she was right there as Bart and I held his little hands and watched his strong heart slowly die. Our baby was pronounced dead around 1:00 p.m. on Monday, February 13.

Please pardon my anger and sadness when I express how devastating it was to read the article regarding Phoenix in the local newspapers, a simply-put story regarding a nameless three year old who had contracted the meningococcal disease. There was no follow up to his condition, no call to action for parents to talk to their healthcare professionals, not even a note on what symptoms parents should look for in their own children.

No one knows where Phoenix contracted this disease. What I know, after doing my own research, is that this disease is only carried by humans and is passed along in close contact situations: crowded areas, high schools, dormitories and even preschools! I also know that this disease has a high fatality rate in children and adolescents, and many who are lucky enough to survive usually don’t escape its devastation without the loss of a limb, some form of brain damage, hearing loss, or kidney failure .

As a mother, I don’t understand how something like this can happen. That “something” being that any child in theUnited States could die from a disease that currently can be prevented by a vaccine. That is right: there are vaccines that help prevent the spread of disease and pointless deaths.

I am sure many of you have heard of polio, measles, mumps, and rubella, and how our society has done its best to eradicate these dangerous diseases. Every child that is born is required to get vaccinated at some point, and I am a parent who says, “That is great!” Why should our children die from a disease that can be prevented? How often do we hear of an outbreak of polio? Not often, or really ever. Thanks to vaccines.

I understand that there are many families who choose not to vaccinate. I respect your right to choose. However, I do vaccinate my children and expect to be given all of the necessary information to make an informed decision. Herein lies the problem: I was never made aware of the vaccinations available for meningitis. It is hard to believe that we currently have vaccines which protect against types A,C,Y and W135. One of the vaccines is approved for use in children as young as nine months of age.

There are five different strains of bacteria that can cause meningococcal disease, and we can currently vaccinate against four of the five. The vaccine is offered to teenagers, college students, military personnel and other selected groups. Although this disease is known to have a high mortality rate in young children, for some reason, this is the age group not offered the vaccine.

I am lost. No, I am more than lost. I am angry and saddened that this disease can take the life a child, and no one seems to care. Why aren’t the younger children protected with a vaccine recommendation? Without any kind of public outcry, pleas of parents who have lost their most valuable treasures are going unheard.

Our government needs to help protect our children and change the way our medical system works. Something has to be done but won’t be until we raise our voices loud enough to be heard. I didn’t want to be an advocate. I would much rather be holding my precious son in my arms, watching him play with his brother, tucking him in at night.

I have to say that without the love and support from our friends and family, I am not sure my husband and I would have gotten through this. So, I must ask you, from one parent to another: wasn’t Phoenix’s life worth that ounce of prevention?

As a new mom, many years ago, I was in awe of this little baby boy I took home from the hospital. As with all infants, he depended on his parents for everything, and everything is what we wanted to give him.

Time seems to spin faster and faster once you have children. I was so enthralled with each new development—the first smile, the first time he rolled over, and then couldn’t roll back. The first sounds, crawling, trying to stand on those sturdy little legs. I was so busy watching him, but also worrying.

As a parent, you hope and pray that nothing catastrophic will happen to your child. Minor things like tubes in the ear—those you get through. But being nervous by nature, I would worry about childhood cancers, accidents, or other tragedies. I was so lucky to have wonderful kids—two great boys, who were good students, kind and funny, and just the loves of our lives.

Our best memories were of the years spent watching them play soccer, baseball, and basketball—sometimes all three at the same time. I wouldn’t change those years for anything.

Of course, my sons had their yearly physicals, and all of the vaccines that were recommended. From the day he was born, until the day he graduated from high school, I feel like all I did was turn around. How did 17 years go by so fast?

Time was speeding up, faster than I wanted. It was part of the natural cycle for my sons to go off to college, and I was happy for them. However, not happy for me. I definitely suffered from empty nest syndrome.

And then my son was a college junior—honor student, pre-med, and a pitcher on his college baseball team, and with a phone call, our world fell apart.

My son called me at work, complaining of a horribly intense migraine, nausea, and sensitivity to light. Several hours later, when he wasn’t feeling better, I asked him to have his roommate take him to the hospital. We were told by the ER physicians that Evan had a little virus, and they didn’t want to send him back to his dorm, so they would keep him overnight. We asked the doctors if we needed to drive down, and they said no. I was uneasy, but said okay.

The next morning, we received a phone call that Evan had bacterial meningitis and had a 5 percent chance of survival. Evan fought for 26 days before he passed away.

After he died, we found out that a vaccine, used by the military for years, could have saved his life. I was even more devastated, if that is possible, because I was overcome by tremendous guilt. Evan had every vaccine that was recommended before he went to college, but no one told us about meningitis.

Shortly after we had moved from California to Georgia, there was an outbreak of meningitis in the Atlanta metro area. My husband and I remember Evan coming in to our den and asking, “Mom, how do I know if I’ve got meningitis?”

I told him, “Oh, Evan, you don’t need to worry about that.” I can’t tell you how those words haunt me and always will. I should have looked into it more, instead of dismissing the idea. Maybe if I had investigated, I would have found out that the military routinely vaccinated recruits.

Would I have found a doctor to give him the vaccine, since it wasn’t recommended by the CDC at that time? I don’t know, and I’ll never know. But back to the racing of time that I mentioned earlier. Part of me will always be in 1998, with the vision of my son at 20 years old, when he passed away. He will always be 20. I don’t comprehend how 13 years have gone by. Again, I turned around, and this huge chunk of time has passed.

My message—make sure your children are vaccinated against all diseases for which there are vaccines. Be proactive and do your research. If the doctors don’t mention vaccinations to you, then speak up. It just takes a second for your life to change forever.

Disclaimer

The information on PKIDs' Blog is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for you or your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.